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Patient Empowerment as a Cognitive Process

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Patient Empowerment as a Cognitive Process

E. Kaldoudi, N. Makris, Patient Empowerment as a Cognitive Process, In: C. Verdier, M. Bienkiewicz, A. Fred, H. Gamboa and D. Elias (Eds), The Proceedings of HealthInf 2015: 8th International Conference on Health Informatics, pp. 605-610, Lisbon, Portugal, 12-15 January, 2015
The concept of patient empowerment has emerged as a new paradigm that can help improve medical outcomes while lowering costs of treatment by facilitating self-directed behavior change. Patient empowerment has gained even more popularity since the 1990’s, due to the emergent of eHealth and its focus on putting the patient in the centre of the interest. Current literature provides systematic reviews of the area, and shows that well defined areas (or dimensions) have eventually emerged in the field. In this paper we argue that patient empowerment should be treated formally as a cognitive process. We thus propose a cognitive model that consists of three major levels of increasing complexity and importance: awareness, engagement and control. We also describe the different constituents of each level and their implications for patient empowerment interventions, focusing on interventions based on information and communication technologies. Finally, we discuss the implications of this model for the design and evaluation of patient empowerment interventions.

E. Kaldoudi, N. Makris, Patient Empowerment as a Cognitive Process, In: C. Verdier, M. Bienkiewicz, A. Fred, H. Gamboa and D. Elias (Eds), The Proceedings of HealthInf 2015: 8th International Conference on Health Informatics, pp. 605-610, Lisbon, Portugal, 12-15 January, 2015
The concept of patient empowerment has emerged as a new paradigm that can help improve medical outcomes while lowering costs of treatment by facilitating self-directed behavior change. Patient empowerment has gained even more popularity since the 1990’s, due to the emergent of eHealth and its focus on putting the patient in the centre of the interest. Current literature provides systematic reviews of the area, and shows that well defined areas (or dimensions) have eventually emerged in the field. In this paper we argue that patient empowerment should be treated formally as a cognitive process. We thus propose a cognitive model that consists of three major levels of increasing complexity and importance: awareness, engagement and control. We also describe the different constituents of each level and their implications for patient empowerment interventions, focusing on interventions based on information and communication technologies. Finally, we discuss the implications of this model for the design and evaluation of patient empowerment interventions.

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Patient Empowerment as a Cognitive Process

  1. 1. Patient Empowerment as a Cognitive Process Eleni Kaldoudi, Nikos Makris School of Medicine & School of Educational Sciences Democritus University of Thrace, Greece kaldoudi@med.duth.gr HealthInf 2015: 8th International Conference on Health Informatics, Lisbon, Portugal, 12-15 January, 2015
  2. 2. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 patient empowerment a process where patients are encouraged to think critically and act autonomously promotes self-regulation, self-management and self-efficacy in order to achieve maximum health and wellness empowerment: a process by which people, organizations, and communities gain mastery over their affairs
  3. 3. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 empowering the chronic comorbid patient facts:  significant increase in the prevalence and incidence of chronic disease  ½ of all chronic patients present comorbidities  the chronic patient is mostly an outpatient  needs to care for herself at home  mainly away from continuous professional care  while trying to lead a normal life prevent detect manage
  4. 4. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 cardiorenal disease & comorbidities some numbers…  hypertension  1/3 of adults (US 2008)  diabetes  8% of overall population  chronic kidney disease  9-16% of overall population  44% of chronic kidney disease is due to diabetes  86% of chronic kidney disease has at least 1 comorbidity  most patients with chronic kidney disease develop cardiovascular disease  chronic heart failure  1-2% of total healthcare costs  end-stage renal disease (dialysis)  >2% of total healthcare costs
  5. 5. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 CARRE Cardiorenal comorbidity management via empowerment and shared informed decision FP7-ICT-2013-611140 consortium: 6 partners 4 EU countries duration: Nov 2013 – Oct 2016 budget: 3,210,470€
  6. 6. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 CARRE approach foster understanding of comorbid condition calculate informed comorbidity progression compile personalized empowerment services support shared informed decision and integrated management
  7. 7. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 patient empowerment CARRE methodology dynamic generic and personalized cardiorenal comorbidities model interactive visualization of the model data/model driven decision support system semantically interlinked data from heterogeneous sources
  8. 8. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 so, we have a good grasp of… the context  who: cardiorenal patients  why: prevent and manage a common, chronic, progressive, costly, health burden the process:  how: data integration, semantic technologies, visual analytics, decision support systems but, it is still unclear… the content:  what is to be designed and evaluated
  9. 9. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 patient empowerment so far … education controlengagement  maintain or improve health  know how to care for themselves  cooperate with health professionals  actively engage in disease self- management actively participate in health related decisions
  10. 10. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 0 500 1000 1500 2000 2500 3000 3500 4000 4500 5000 pubishedpapersperyear year of publication patient education patient engagement patient empowerment searching PubMed
  11. 11. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 empowerment as a cognitive process empowerment  control on one’s own actions  complex construct that involves various cognitive processes and skills  knowledge acquisition, through perception  thinking and learning  awareness of one’s own current conditions and /or needs  active participation in the management of the current or future condition and in the relevant decision making thus, following the overall approach of cognitive psychology…
  12. 12. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 empowerment as a cognitive process awarenessengagementcontrol understanding: personal health condition awareness knowledge: relevant, structured information with a purpose information: data and information aggregation action, participation emotional support suitable, supportive physical environment enabling technological framework feedback mechanisms cognitive emotional social shared decision decision support collaboration communication mindchange
  13. 13. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 knowledge information understanding awareness: understand own health condition access to information structuring and organizing information with a particular purpose ability to realize medical evidence in relation to their personal condition
  14. 14. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 combine personal data with generic medical evidence semantic linking to produce concept maps of educational data visual analytics to simplify complex expert information links to relevant educational content on on-line educational repositories (MedLinePlus, wikipedia) knowledge information understanding awareness: understand own health condition
  15. 15. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 participation & action enabling technological framework personal sensors and applications smart alerts feedback mechanisms feedback to the patient engagement emotional support on-line social networks supportive physical environment describe & exploit health content of the physical environment
  16. 16. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 control: decision making shared decision decision support collaboration communication collaborative spaces personal health records decision support systems
  17. 17. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 control: mind change modify one’s own mental states, e.g. beliefs, emotions, intentions, and thus achieve and maintain a healthy behavior  identify motivation, attitude, habits  design interventions to change first representations then behaviours requires highly interdisciplinary research cognitive emotional social
  18. 18. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 mapping CARRE services to the empowerment model. model level CARRE service awareness: information aggregation and knowledge provide visual and quantitative model of disease progression pathways and comorbidities trajectories, based on current medical evidence awareness: understanding personalize the risk model to each individual based on his personal medical data and real-time sensor measurement to support disease status awareness engagement: enabling framework use the personalized model in conjunction with real time monitoring to create a set of alarms to enable patient engagement and give feedback control: provide advanced decision support services and mindchange interventions based on the real-time coupling of medical evidence, personal health status and intentions and beliefs, as deduced from social web data mining
  19. 19. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 work in progress based on the understanding of the “content” (the what”)  design appropriate evaluation methodology that follows the various levels of the empowerment model  make informed selection of and/or construct appropriate evaluation tools for each level of the empowerment model Symons’ evaluation onion (Symon 1991 & Pettigrew 1985) process: how content: what context: who, why
  20. 20. acknowledgment work funded under project CARRE co-funded by the European Commission under the Information and Communication Technologies (ICT) 7th Framework Programme Contract No. FP7-ICT-2013-611140 CARRE: Personalized patient empowerment and shared decision support for cardiorenal disease and comorbidities http://www.carre-project.eu/
  21. 21. Contact Eleni Kaldoudi Associate Professor School of Medicine Faculty of Health Sciences Democritus University of Thrace Dragana, Alexandroupoli 68100 Greece Tel: +302551030329 Tel: +30 6937124358 Email: kaldoudi@med.duth.gr Email: carre@med.duth.gr Cite as E. Kaldoudi, N. Makris, Patient Empowerment as a Cognitive Process, In: C. Verdier, M. Bienkiewicz, A. Fred, H. Gamboa and D. Elias (Eds), The Proceedings of HealthInf 2015: 8th International Conference on Health Informatics, pp. 605-610, Lisbon, Portugal, 12-15 January, 2015 ISBN: 978-989-758-068-0 http://www.healthinf.biostec.org/

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